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-   -   baby with AVM in TN (http://birthmark.org/board/showthread.php?t=3582)

momof6kiki 11-06-2009 01:30 AM

baby with AVM in TN
 
Hi everyone I am new here. My name is Cindy, and my youngest just had surgey 2 and a half weeks ago to remove what we thought was a cyst. I was shocked when they said the pathology reports came back and that it was AVM. My son is 10 months old.

When we first discovered this, we discovered a HUGE lump on his collar bone, I thought that it was broken and I didn't know how it happened. We then has an US where they told me that it was a cyst. After meeting with the General surgeon at Vanderbuilt Childrens hospital in Nashville, who did another ultrasound, they too said cyst. I think this is why it was such a shock to leavn it was AVM.

Now that it has been 2 and a half week, we noticed this past Saturday that this huge lump that he had is already back! Not only that, but after doing some research I read that there can be a link between his AVM and his hemangomia that he has on his face. After thinking, I realized that they both appeared about the same time.

I am now on the search to get my son the care that he needs. I want to see a vascular surgeon, but I have no idea who we should see and where to start. Vanderbuilt childrens hospital does not have a vascular surgeon. I called my pedi to get a referal two days ago. She said that she had nothing that said he has avm so she was calling his surgeon to request his pathology report before she could give me a referal. Two days later, I am still waiting. I even called the surgeons office today to request that they send it to them, and still NOTHING. I am so frustrated.

Any help on what to do? Who to call? We have Tricare insurance if that helps.

Anyone know why this would come back s fast? Is it something that can't be operated on? Oh, and when they did the US, there was no blood flowing through it at all. Not sure if there is blood flowing through the new growth, as I can't get any DR's to see me. His surgeon was on call this week, and told me on Monday that he could wait to be seen until next week. I am really upset by this surgeon, as she is also the same one that told me that he has AVM, but if he was healing ok, we didn't need to come back and see her at all!

missy 11-06-2009 01:58 AM

You can go to the surgeon's office and request the pathology report in person.

(it does take forever to get records... it's nuts!)

Other people will come by soon to answer your questions!!

Missy

momof6kiki 11-06-2009 12:25 PM

Thank you, I know I can get a copy, it's just that it is over an hours drive out there, my husband is deployed, and I have 5 other children. This would be MUCH esier if they could just get a copy faxed to my DR like they said that they would. I want what is best for my son, but being here alone with no family near by, it's not like I have all kinds of free time. They keep saying they are sending it, yet my DR is not getting it.

missy 11-06-2009 11:08 PM

Ah. Understood.

Well, I suppose you can just keep calling and bellyaching. What a pain!!

Missy

cab 11-09-2009 04:41 PM

All I can tell you is to keep pestering them! I was born with a VM in my right leg. I don't think Vandy Children's has a vascular anomalies center, or at least I was unable to find one (I'm a Vanderbilt student). Dealing with doctors, insurance companies, and scheduling is the most frustrating thing in the world. Good luck with everything and keep calling until they get their acts together.

missy 11-10-2009 01:45 AM

Have you made any progress?

Missy

momof6kiki 11-17-2009 11:45 AM

Here's my update. My DR refused to give me a referal. She said that the GS at Vandy was it. There was nothing else. I called my insurance company and told them I want a second opinion from a vascular surgeon. They said that since he was refered to a general surgeon they can't give me a second opinion appt unless it is to another general surgeon, and that I need a referal from my DR to see a vascular surgeon (can't find one near me at all that will see babies anyway).

I went back to my appt on Friday to meet with the GS who was over an hour late to my appt! She was stuck in traffic aparantly. I understand things happen but we were stuck in a hot room with 2 kids. Had they told us that she was stuck in traffic we would have left to eat and come back. I just wish they would have said hey she is stuck in traffic. I then felt rushed when I saw her because I knew not only were we waiting so were others.

Anyway, she said that it has not come back, but it is healing stuff under there that is causing the mass? Her nurse told us that AVM is her specitality and that she travels around the world dealing with AVM. I am not sure what to even think about that. I told her that I want an MRI she said OK. I am waiting on my phone call for that appt. She doesn't think the spot on his face is a hemangomia but a bug bite. UMMMMMM he has had it since July! Not a bug bite. She said she could refer him to dermatology to have that looked at ? I don't understand ( I mean I get that, but not that it is a bug bite). Anyway, I will deal with that later. My concern with it is that there is a link between H's and AVm meaning that there could be more in his body.

I did find out that there is a childrens hospital in Ohio that studies AVM, and they have it as part of their general surgery dept from what I have read. So, if he has more, I will be calling my insurance and telling them I want a second opion there if the MRI shows more.

Does anyone else have any suggestions? I know this part of the site is slow, but I would love to hear stories from anyone.

nickbar 11-17-2009 04:14 PM

Hello, you surely are not getting the care you deserve. Please email me directly and I will work an options for you. Was your doctor ever able to get a copy of the pathology report for you?

Corinne

momof6kiki 11-18-2009 01:51 AM

I am not sure if my DR got the pathology report, BUT they did say that I can register online to be able to get ALL of his medical stuff available to me online. I guess I need to do that now.

frugiedh 11-19-2009 12:45 AM

I would also like to suggest that you post this question at www.avmsurvivors.org which is a great AVM resource with lots of extremity AVM patients.
You are definitely NOT getting the correct care and information about your baby and you are correct that you need a vascular surgeon. I am in Canada so I cannot help you. My heart goes out to you. I hope you can get the care you need for your child.


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